Another "wrong" Diagnosis?

[glutenfreemamax2]

I'm so frustrated I'm sittng here crying. From my lasts posts, I was gluten-free 1 week prior to blood work. The called and told me I was negitive. I will get exact numbers on Thursday. I ate out on Friday, and with in 4-5 bites my stomach hurt. I assumed they didn't clean the grill in the kitchen, and it was cc. Sat I went to a different resturant and was fine, but ate chocolate which is a known trigger for me. Was fine on Sunday. Monday I had a bm with a little bit of blood. My stomach is "off". I am due for my period pretty soon. I nearly had an emotional breakdown last night. I just feel like no one understands.

I went to starbucks today, and read all the labels. They all had caramel in them, so i opted for chai tea latte. She used e community spoon to stir it. I drank maybe a quarter, and my stomach started to hurt. I asked one of my friends who has Celiac, and she said maybe its the soy. I asked anther one of my friends, and this is what she wrote back:

"Coffee is gluten free, most of their flavorings are gluten free. Anything with "chips" is off limits, the skinny fraps are off limits. Most Sbux have Lucy's gluten free cookies...and ALL servers/baristas should be educated on allergy issues. If they aren't, I'd be contacting their management or higher!

In all seriousness, Jess... if you are THAT sensitive, your blood tests would be have bee positive, without a hesitation of a doubt. I think you have more going on that "just" gluten intolerance. I mean, I've had positive blood tests and an "inconclusive" biopsy, with positive genetic tests.... and I can eat a donut without issue. A spoon, that's been rinsed, after a miniscule amount of flavoring would not bother even Brenna. Something else, besides gluten, is causing your issues."

So now i'm left asking again, am I barking up the wrong tree? I am looking at another "wrong" diagnosis? I just....i'm so frustrated.

In 05, I was gestational diaetic, and anemic in 07 I went to the endocrinologist, who could only come up wth some elivated liver something or other, and a swollen thyroid. Never said anythng else. In 09 I went to the neurologist, and all she could come up with is a positiv marker for Lupus. I went to the GI in 04 who told me it was just IBS, and I needed drink more water, and exercise. Come on already?!?! What in the world is going on?

And now, yes, my feelings are hurt. I feel like my husband thinks i'm crazy, and now everyone else does to. I was also diagnosed with OCD, and depression. Ugghh

[Cypressmyst]

I'm sorry that so many people that should be supportive are not being so. It is a slap in the face sometimes isn't it?

*hugs

The fact of the matter is that gluten causes different reactions in different people, only a small percentage have Celiac or any digestive complaints at all for that matter. They may instead have their gluten issue manifest as Hypothyroid (like me) or Rheumetoid Arthritis, or Brain Fog, or Depression (also me)or...well, you get the picture.

You may well have other food sensitivities, almost everyone does whether they realize it or not. But if you cut out gluten and you feel better then damn the tests, do what you know is right. Maybe the Celiac who can eat the donut has such extensive nerve damage that she no longer feels anything in her intestines...do not take that as a measuring stick.

You are not crazy. *hugs again* You live in a world that has yet to realize that the arsenic they are putting on as face powder is killing them. You are ahead of the curve. Stay strong and use this forum as much as you need to. It will get easier. The truth about gluten is getting out, one person at a time and I look forward to the day that there is a special wheat section at the store.

[cassP]

-so, were u able to see the ingredients for the chai??? i havent looked at them, but i used to work at barnies- and im sure the chai powder has a lot of crap in it- it could have wheat or barley, or maybe just corn byproducts????

i, personally, if i pass a certain limit on coffee or tea- i will get IMMEDIATE "D".. both coffee & tea can irritate the intestines of some of us... or the milk (dairy or soy) that they put in your chai could set u off... ESPECIALLY if you're just fresh to the gluten free- dairy used to always give me the "D".

also i and some others cant digest excess fructose. ie: i can handle an iced mocha at starbux- but last year i got a pumpkin spice latte and i was doubled over in gas pain (i think it has HFCS).

anyways, try to take a deep breath- it may not be gluten at all- PLUS, even if you dont end up with additional food intolerances- you most likely will have them for this transitional period. when your gut is healing- it can almost react to anything... hope u feel better

[cassP]

ps- PLUSSSSS our test result numbers dont always equal our symptoms... false negatives are common... and then you have the majority of celiacs with NO symptoms and HIGH numbers.

ive suffered gut issues most of my life... in fact i canceled my movie plans tonight cause i overdid the fructose with my tomato sauce and my ttg was a "7". then you have my dad (who has NEVER had a stomach ache, and whom i highly suspect is an asymptomatic celiac- w/ his DQ8 & lifelong excema/anxiety)- i bet u he'd get like an "80" or something... it's just a complicated disease to diagnose

did u happen to get your total Iga serum checked??? if you're "low" or deficient- that could make your numbers inconclusive

[mushroom]

I am sorry to be the wet blanket here, but I think your expectations are a little too high for someone who has been off gluten for just a little over a month. In the last week you have eaten at two restaurants and been to Starbucks already. Now this is just me, but I didn't eat out until six months into the diet and then it was only because I had to, not because I wanted to. And I haven't even been tested for anything. I just wanted to make sure that I had mastered the diet and knew what to look for when eating out and who to talk to to make sure I was safe.

Your degree of sensitivity really has little to do with your test results. I know the doctors rely on them, but really, the number of gluten intolerants with negative tests is huge. My sister was negative, but her daughter was positive. It is really hit or miss when it comes to testing. The only true test is to eat strictly gluten free, starting with fresh, whole foods you prepare yourself to avoid all chance of cc. Get your diet under control before you branch out into restaurants or you won't know what is affecting you. It is certainly possible that you have other intolerances besides gluten, but these are much harder to discover if you eat lots of processed foods and eat at restaurants. Just MHO.

[GlutenFreeManna]

You friend sounds very uneducated about celiac and gluten intolerance. Especially if she still eating donuts! She may well be a diagnosed celaic and have no physical reactions to the gluten when she eats donuts, but that doesn't mean she should continue to eat them. She is doing damage to her body even if she has no reactions. The fact is that 20% of negative tests are false negatives. That means it's possible to test negative and still have celiac or gluten intolerance. Plus even if you had a positive test, your level of sensitivity may be different from hers. One person may have bad reactions that put them in bed for a week and another person may have symptoms that only last for a few hours and then they are fine. I think you need to give the diet more time and avoid eating out for a few months. Eat as much whole foods as you can, stay away from processed/convienence foods (even if they say gluten free) and possibly cut out dairy or soy if you think they are giving you problems. You might also try keeping a food journal to note what you eat and how you feel. My syptoms can come on anywhere from 24 hours to 72 hours AFTER I get glutened. It makes it hard to figure out what got me sometimes.

[Jestgar]

Tell your friends, your husband, your family, that you refuse to make yourself sick until they discover how to test for what you have. It's not your fault that medical science isn't perfect, and you are doing things the old fashioned way - paying attention to how you feel.

[GlutenFreeManna]

Also I want to say that not all brands of soy milk are gluten free. I worked in a large chain coffee shop for a while and although we usually used the same brand of soy milk, sometime we ran out and had to go purchase some before our shipment came in. I know Starbucks does the same thing because they would sometimes buy milk or syrup flavors from us when they were slammed with customers and couldn't send somone to the store (we were in the same mall). So even if you find a drink at a coffee shop you don't react to, never assume that the brands they are using are the same. Never assume they know anything about allergies either. We were not taught anything about cross contamination or allergies. We used the same wand to make the milk for soy lattes that had been used on milk lattes. The wands have little holes in them that blow air into the milk. Milk gets in these holes. While we would ideally clean these out by running them for a minute before going from a milk drink to a soy drink, I know it did not happen. They were cleaned mostly at the end of a shift or at closing time. We were only taught to clean them to prevent bacteria growth, never told anything about allergies and cross contamination. The metal pitchers that held the milk also were not dedicated soy or regular milk containers. We grabbed witchever one was empty, rinsed it breifly and used it. These were only scrubbed down at the end of a shift or end of the day. So there's more possiblity of CC besides just the spoon.

Finally I did a search and it seems you are not the only person to react to chai tea lattes from Starbucks. Here's one bloggers possible explanation: Open Original Shared Link

[Takala]

That is a good link about the reactions to chai lattes at Starbucks.

I used to get a consistent, bad reaction (migraine) from them and could not resolve the issue after grilling them about the ingredients- they said they were using Silk soymilk, and Silk is insisting that they're gluten free also. So if it is supposedly not the soy milk, then it's either cross contamination or something in the spice mix of the chai. I don't care what it is, I'm just not drinking it anymore because I can make my OWN latte type drinks at home and not react, using tea, spice, and coconut milk. Therefore it is not the plain tea, the spices ginger or cinnamon or cloves or tumeric, and it has to be something else. I'm tired of playing Reaction Crime Scene Investigation with some of these companies, they either have undisclosed ingredients or they just don't know what's in them and it's drink at own risk. Some of the other flavors of tea from Tazo are not gluten free.

People who react non classically to cross contamination or to outright deliberate eating of a gluten item, and then tell other people they aren't getting sick from something that did make them sick, ought to get their heads examined. I am not as sensitive as some, and yet I would never think to tell anyone cross contamination or hidden undisclosed ingredients are not a real issue because of allergies I have to other things. And I have had a few miserable cross contamination reactions from eating out in restaurants, fortunately, not very often.

As another poster said, if you think that gluten intolerance is your real issue (and I went through the wild goose chase diagnostic mill with other things wrong that no one could pin to gluten intolerance) you have to get very serious about the gluten free diet if you notice reactions to gluten in spite of the tests. I have never had blood tests with enough antibodies to be in the "Seal of Diagnostic Approval" range. So what. I lost count of how many times I was told I might have Lupus or MS because I had such joint flares and neuro symptoms and kidney problems.... well, surprise ! I don't. And now I don't have those problems other than I am still stuck with the once in a while lower level arthritis flares (a sign I may have eaten something wrong) and a bit of residual damage.

[glutenfreemamax2]

Thanks for all your replies. I am starting to feel better. I have taken the afternoon off from work to get my head in order, and i'm off tomorrow. I am going to the dr, and I finally feel ok to talk. This has been a very dark place for me. My husband is really starting to understand and come around. I agree with the eating out. I have cut it in 1/2 from what I used to do, but I agree-it has to be 100% eliminated. We went to breakfast at a resturant on Sunday morning(which we always) do, and I'm so sick of feeling like crap. I ate before I went, and just had some coffee while I was there. Fine, I had no problems. I think I am mentally ready to start taking charge of my health. Thank you for all your words of encouragment. They really do help.

My husband called me last night, and told me he made me dinner. I was really worried. He said me made tacos. That made me even more worried. I got home, and he was so proud. The seasoning had wheat in it, so he didn't use it and make 2 batches (one for me and then one for the kids) because he didn't want to make some, and then possibly cc. He found gluten-free corn chips at the store, and ONLY served those so the kids couldn't touch something, and then touch them. I was so proud, and felt almost relieved that he is now taking this seriously.

I also got my period, and I'll admit, that I am more emotional, and seems like things are worse around that time.

I'm worried about the raise in cancer rates with undiagnosed celiac. They keep me awake at night with worry.....I am working on it in therapy

I still have a lot of fears about my body. Some days I feel like I'm walking around in a dark room, bumping into things, feeling them, and trying to make out what they are. That is hard for me. I'm a very matter of fact person, black or white. This gray area on if I have it, and if I don't, and what I should possibly cut out is just making me crazy.

I journal every day anyway what I eat. I have to email it to the Dr. Phil show nutritionist. I will start logging physical symptoms, and emotional feelings to see if maybe together we can come up with something. He thinks it's dairy too, but I am having a really hard time giving that up

Now the real question- do I have the endoscope and colonoscopy, or just stay diet controlled for a year and gluten challange?

[Laennie]

I'm kind of in the same boat as you. I'm starting week 3 of going gluten free. I started it on the doctor's recommendation the day after getting my blood test. My results came back last week as negative. The same night before I got the results out of the mailbox we ate gluten free hotdogs. I just ate the hotdog with no bun & was obsessing so much over making sure my husband didn't touch his hotdog bun & then my chips or something else that I cross contaminated myself with the mayo jar! I didn't realize it until later when I wasn't feeling that great.

It's been hard with some of the family, thankfully my mom (who is usually negative about everything) has been very supportive as well as my husband who's been through so much with me. Even though my test came back negative because of my reaction to going gluten free already I am still highly motivated & my mom & husband are very behind me on this. I have found since cutting out gluten that I am reacting to dairy as well. I am a dairy lover so thought it would be very hard to give up dairy. Well so far I've replaced my cereal milk with almond or soy milk. They taste so similar that it doesn't make much difference to me. My biggest weakness is icecream & I gave in the other night & didn't feel great afterwards. Too much cheese or any dairy seems to make me not feel so well (yogurt is the worst) so I've cut the major portions of dairy out but still can manage a little. Had 3 tacos last night with a little cheese on them. The idea of cutting out dairy is more scary than just cutting back & seeing how you feel. If you & I both have celiac (even though tests were neg) it would make sense that we would have problems with dairy right now. I intend to keep going this way & if just a tiny bit of dairy starts to bother me I guess I will cut it completely but my hope is that in several months I'll be able to tolerate dairy better.

Keep your head up & stay strong. After I got my negative results I started doubting myself & getting somewhat upset but then I realized I didn't feel well because I dipped in the mayo jar so it made me feel more committed to this. I'm not going to let some test that has such a high false negative rate tell me gluten isn't making me sick. I feel sooo much better physically & mentally since I cut it out & for me that is what matters.